Month: September, 2013

I’d like you to meet Kerry, she’s 19 years old and she has chronic Lyme disease.

When Kerry was 12 years old she caught a cold and it turned into what SEEMED like a very bad flu.

It NEVER went away and in fact became worse.

Her illness progressed and by age 14 she had lost the feeling in her legs and ended up in a wheelchair.

Doctors had no explanation for what was wrong with her and suggested to her and her parents that she was making it all up.

Then a bit of a lucky break came.

A lady that Kerry’s mother worked with suggested that she get checked for Lyme Disease.

It turned out that Kerry DID in fact have Lyme Disease.

In addition to Borrelia, Kerry has Bartonella and Babesia.

These infections are just the ones she has tested positive for so far and it is likely she has others.

She never had an EM rash and there is no memory of an insect bite that proceeded or seemed to be attached to her illness.

So far she’s had five PICC lines, one life port and currently she has a Hickmans catheter for daily antibiotic infusions. She is also on a special diet and has piles of supplements and things she must do to heal.

She is often in pain and quite sick and suffers seizures, often many in one day.

I have been following Kerry on Face Book as she documents her journey.

Most of the photos and videos are of her smiling and hopeful but I have seen some that were difficult to watch and she is jerking and twitching and her speech is slurred.

This young lady has been through a lot and obviously it could not be summed up in a blog post but this video is a peek into what she’s been through:

The healing is slow and is hard going but progress IS happening.

Late last month I saw several posts that gave me so much joy.

The feeling is coming back in her legs and when I saw her wiggle her toes it was an amazing thing.

Then I see another post and guess what (with the help of a walker) she’s standing up AND……..

next I see she is WALKING short distances.

To watch this young lady heal is one of the most amazing experiences.

She’s still very sick and has a long road ahead of her but at least she has a road in front of her.

I don’t even want to think about what would have become of her had someone not suggested she

get tested for Lyme and I really can’t stand the idea that there are many sick out there that have no idea they have Lyme disease.

Lyme Disease is far more common than most understand and It is called the great imitator because it can mimic almost any other illness.

It affects each person differently and I would like to point out that while this is Kerry’s experience with Lyme, another’s experience can differ greatly. I say this because if you or someone you know thinks they might have Lyme don’t decide you don’t because you aren’t as sick as Kerry. Lyme comes in every degree and flavor.

Lyme Disease is the sixth most common reportable illness in the Untied States and it is estimated that it is 4 times more common than HIV.

Lyme Disease can cause meningitis, kidney and gastrointestinal problems, paralysis and psychiatric disorders and it can be fatal.

Most Doctors don’t know what to look for and the test is notorious for giving false negatives. DO NOT be deterred by a negative test.

Meanwhile those sick with Lyme have been left out in the cold and forced to pay outrageous amount of money seeking private care. For many that can’t afford private care, they are forced to live sick and suffer. Until the CDC and ISDA acknowledge chronic Lyme Disease and change their guidelines, The insurance companies are getting away with murder for denying payment for treatment.

Each year, more than 30,000 cases of Lyme are reported to the CDC however the CDC has recently admitted that number is roughly TEN TIMES HIGHER than previously reported. I often think about those 300,000 and the even bigger number that have been misdiagnosed.

In the meantime can we get some prayers, high fives and good vibrations for Kerry?

I’m rooting for this young lady in the biggest way and I do believe I picked a winner.

Whatever Morgellons disease turns out to be, for me it was a blessing. It taught me I have Lyme disease.

I get sad when I wonder how many people out there have Lyme and don’t know it.

How many people just think they’re only crazy lazy, or stupid.

I wonder how many people are in mental institutions or prison or just lost in their own house (until they lose their home) because Doctors have failed to accurately diagnose them.

Who’s fault is this?

I know my own private Doctor is a good Doctor and a kind Doctor and she truly didn’t know what Lyme disease was or that I had it.

She could have never diagnosed me for an illness she knew nothing about.

Who’s fault is this?

Is the Center of Disease Control really that powerful?

I watched the video below and I saw myself and my life in those people and I realize I’m crying because I’m angry that I let Doctors, so-called specialists call me crazy. I took their pills and I did what they said and I believed them when they said I was I imagining the pain and it was only stress that caused me to get lost in my own neighborhood.

For myself I lost a lot of time to Lyme. I’ve had it for most of my life.

If I told you what I’ve been through, it might make the hair raise on the back of your neck.

I can’t say I lost my life because I’m better than that and I’m bigger than Lyme and I would like to think I transformed my illness and got as much good as I could from it.

The problem for me is when I think of my lost time and I multiply that by an unknown number from all the people who have Lyme. That’s when I become outraged.

That’s a lot of lost time and potential.

If not for Lyme, my sister would have been a Doctor and when you start adding up the number of sick and multiply that with collateral damage, it starts to get ugly.

Meanwhile America is going to the dogs and I wonder how many of the sick could have been watch dogs for liberty, only they can’t get out of their beds.

How did this happen?

Is the CDC really that powerful?

Call me crazy but this humongous fuck up doesn’t feel like an accident and yes I’ve gone back to swearing.

I cleaned up my gutter mouth for a long time because I realized people don’t listen when you swear and I thought it was just more graceful;

But this disaster is an epic disgrace and “I am myself the matter of my book”.

I see videos like this and I get mad, I just don’t know what to do about it. I’ll keep talking and probably cussing until I figure it out, thank you for listening.

Please watch this video of two Vermont farmers suffering with Lyme disease. It’s less than 10 minutes of your time.